Patients, families want answers about rising insulin costs

The cost of insulin continues to rise at an alarming rate and patients and families dealing with diabetes want the Minnesota State Legislature to step in and help during the 2019 session.

"I believe the cost of insulin is immorally high," Senator Matt Little, DFL-Lakeville, said as he convened a roundtable discussion about the issue at the State Capitol.

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It's unclear what the legislature could do, but some advocates for diabetes patients at a minimum want there to be more price transparency required for drug companies.

"Can you even imagine what it was like to tell people that your son died at 26 because he struggled to afford the one medicine created to save his life?" James Holt Jr. asked people attending the meeting Tuesday morning. His son, Alec Smith, died last year when he couldn't afford the high cost of insulin.

"I can imagine how scary it was for Alec to walk out of that pharmacy without his life-saving insulin," his mother, Nicole Smith-Holt, told lawmakers. "He left that day because he did not have the $1,300 that the pharmacist was charging him for insulin supplies."

Other patients and families at the meeting talked about how the cost of a vile of insulin went from about $21 in 1996 to $300 to $400 now. A vial of insulin only lasts a week or two. Part of the problem is the lack of competition to bring costs down. Three companies make about 96 percent of the insulin manufactured in this country.

According to the American Diabetes Association, nationwide 39 percent of adults and 49 percent of children paid more for insulin in the past year. That resulted in 26 percent of them regularly taking less than their prescribed dose.

Alec Smith's mom says she won't stop fighting until other parents don't have to face the tragedy she did.

"I strongly believe that every single individual in the United States has the right to affordable and accessible health care and medications," she said.

The meeting on Tuesday was not an official legislative hearing, but there likely will be hearings during the session that starts in January.